Liam's Smile

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We have not posted in over a year. The year has been eventful both regarding Liam's health and in our own family life and we finally have a moment to catch up and post. Here is a recap of the last year and our plans going forward.


July, 2008

On July 24, 2008, we welcomed our third son Jean-Luc Idziinto the world. He came three weeks and one day early, and although he spent 11days in the NICU is a very healthy and easy baby. Lars and Liam both seem tolike him. We are really grateful to the Scotty Fund who helped us by fundingchild care help right after Jean-Luc's birth. Kayleigh, a fourth year nursingstudent, did an amazing job with Liam and Lars and made our lives less chaotic,especially since I was basically living at the hospital for  11 days with Jean-Luc.

Our plan for Liam....

We would like to institute patterning exercises for Liam andeventually have him re-evaluated at a facility that helps brain injuredkids.  However, since Rafal isstill job hunting and I am caring for newborn, we have had to put this on hold.We would also like to take him to Lourdes, France for the graces given there.

We are extremely grateful to all who have supported usthrough prayer and financially. We use the funds for smaller expenditures likespecial shoes for children with cerebral palsy and we just purchased a specialpiece of equipment called a “special tomato”. It will help Liam to sit in aseat. It has a 5-point harness seatbelt and his feet will touch the ground sothere is a chance that he will be able to push the chair with his feet—we'llsee!


March – June, 2008

In Connecticut with the love and attention of hisgrandparents in addition to mom and dad, Liam has acquired some new skills. Hecan give a “hi-five”, lift his pointer finger to show that he is one, and hegives mommy kisses by rubbing his nose against my nose. All of these actionsare done with a degree of modification, but Liam is doing them. It was alsoduring this time in Connecticut that a neurologist confirmed that Liam hadmoderate to severe cerebral palsy.

 

January, 2008

In January, I took a medical absence from work. I eventuallyresigned my position on account of my third pregnancy. It appeared that therewere going to be some potentially very serious complications and we decided asa family that it would be best if we moved to Connecticut.

 

November – December, 2007

In the following months, we took Liam back to the emergencyroom for suspected seizures, fevers and coughs (signs of pneumonia) and bloodwhen he vomited. None of these problems required admittance to the hospital.Liam also resumed physical, occupational, and feeding therapy. It took nearlythree months to get these therapies re-instituted after we moved counties inTennessee so that I could be closer to work.

 

October, 2007

On October 25, 2007, Liam had his g-tube surgery. It wassupposed to be one day surgery. I asked for a second day in the hospital onaccount of Liam's general health issues. Liam did extremely poorly after thesurgery. We headed back to the ER twice. Within two days Liam was re-admittedon account of dehydration and extreme pain. Liam was put on morphine to controlthe pain and was re-hydrated. During this time, it was noted that he hadaspirated formula, although it did not develop into pneumonia.

 

September, 2007

Rafal took Liam to Miracle Mountain of September 2007. Liamdid not make any gains during the 40 rounds of hyperbaric oxygen treatment norin the months to follow. We chose to take Liam to Miracle Mountain before hisg-tube surgery in the event that he would not be able to tolerate “diving”after the surgery.

 

November 25, 2007


Liam had g-tube surgery on October 25th.  The actual surgery was 
uneventful. It was supposed to be one day surgery. Liam was in quite 
a bit of pain so I asked that he be kept for another day. We brought 
him home on Saturday. By Sunday morning, we were back in the 
emergency room. Liam would sleep for two hours and scream for two 
hours, even with pain medication. The hospital staff dismissed him as 
a fussy baby. Liam was not screaming too badly at that point.

I gave him his pain medication with his feed at 10am. (We were 
struggling to feed him at this point, we didn’t know if the feeds 
were causing him pain, the actual food, quantity of food, etc.) The 
staff discharged me, and wanted me out of the room so I could not 
finish feeding him. I knew he would start his screaming cycle again, 
so I continued to feed him in the emergency room waiting area. By 
11am, his screaming was in full force. I asked the discharge nurse if 
this screaming was normal one hour after giving pain medication. 
Needless to say, I was brought back in. Liam was diagnosed with 
severe acid reflux and he went back on Zantac. However, it takes 
nearly one day for Zantac to start working.

We were struggling to feed him on Monday on account of the severe 
pain. I made an appointment with his new pediatrician on Monday, when 
I knew that he still was not at a reasonable intake of formula. I 
began supplementing with Pedialyte to prevent dehydration. Dr. Singh 
knew he was dehydrated to some degree. She almost sent us back to the 
emergency room right away, but we were able to get enough Pedialyte 
into Liam. She called several times to check on him during the night. 
We were very impressed. Liam’s pain continued. At midnight Rafal took 
him back to the emergency room. Liam was admitted because he was 
exhibiting some signs of dehydration and uncontrollable pain.

By Tuesday evening, he was on Morphine to control his pain. He was 
also scheduled for numerous tests to figure out the extent of his 
reflux. As the days went on, Liam’s pain subsided, which made his 
feeds easier. However Liam never was able to do a full feed of 8 
ounces without vomiting part of it up. It took at least a week of 
Liam in the hospital to get the feeds at a reasonable level/approach.

Liam has continues feeds for roughly 10-12 hours at night. This means 
that his pump puts 50mls of food (1.5 ounces) per hour. Then he has 
three, 1 hour feeds consisting of 4 ounces. This gets him enough of 
his caloric and liquid intake per day appropriate for his age.

Liam is also on a sedative, it takes the “edge off” at night and he 
no longer screams from 4-6 am nor does he cry for 4-6 hours per day. 
Liam has started to nap during the day, and he will usually do a one 
hour nap in the early afternoon. Liam still fusses if he is not 
“attached” as we like to say, constantly being held or in the baby 
Bjorn.

We made one more trip to the emergency room recently. His myoclonus 
twitches came back after the g-tube surgery and were stronger and 
were in greater quantity. Seizures and spasms were considered again. 
After nearly 24 hours in the hospital and one EEG later. Seizures and 
spasms were ruled out for the time being. He is always at risk.

On a side note the pediatricians at Vanderbilt wanted to schedule a 
Nissan surgery for Liam, to reduce his reflux/vomiting. It is a very 
invasive surgery. We did schedule one for December but our 
pediatrician does not think he needs it. We have not been convinced 
either but we know that it is easier to schedule a surgery early than 
to try to schedule on at the last minute.

That is all for now. We are hoping for an uneventful holiday season.


August 9, 2007
 
It has taken me awhile to write this update after we returned after Miracle 
Mountain because I wanted Liam evaluated by other professionals before I 
could accurately say if the Hyperbaric Oxygen treatments made a difference. 
Thankfully, it did. I could write pages and pages about the wonderful people 
I met and how each one of them has helped me, but I am trying to keep this 
update as organized as possible, so I just focusing on Liam's gains and 
issues.

Overall

I realized the first time I entered the chamber for a 90 minute session (in 
my pajamas!-we had to wear 100% cotton items with no metal or plastic on 
them, my pajamas were the only item that were acceptable), that no person 
would ever go through this process if it didn't help their child a 
significant amount. The thought that I would be doing this 40 times (sitting 
in a 10ftx5ftx5ft chamber in my pajamas without any petroleum based products 
such as make up or deodorant) was a bit daunting. However, the fact that my 
roommate had done this on 4 previous occasions (160 times!) with her son 
Jaxon, now 6, who had hearing loss, and CP,  had seen great results 
encouraged me.

Results from the treatments

Arms

Liam's arms opened up fully. Even when Liam was perfectly relaxed, his arms 
never straightened fully. This wasn't really noticeable unless you are 
professional, medical or therapist. While in the chamber, I sat next to an 
occupational therapist, (her daughter was receiving oxygen treatments). She 
noticed that Liam's arms had opened up during our sessions. Additionally, 
Rosie, our patterning volunteer noticed it as well when she saw Liam 
yesterday.

Head Circumference

Liam's head circumference was less than the 3rd percentile before we left 
for Miracle Mountain. When we had returned, it had grown to the 7th 
percentile; this means that it was exceeding normal growth which is 
wonderful news. Also, since Liam is a large boy, 17 pounds and 24+ inches 
long, his small head looked out of proportion with the rest of his body, it 
is now looking more normal. We know the 7th percentile is an accurate 
measurement since it was done at Vanderbilt Children's hospital. (We took 
Liam to the emergency room. We were seriously concerned that he was having 
infantile spasms which are a severe form of seizures. Thankfully, his EEG 
showed NO seizure or spasm activity. Liam isn't out of the clear, these 
conditions can develop at any time, but for now, he does not have these 
issues.)

Smiling

Rafal and I are sure that Liam is smiling. Liam's smile is different from 
other babies. Since Liam has some tone issues on his face, his smile looks 
more like a content or pleasant look. His "smile" occurs during specific 
activities, that is why we are sure he is "smiling". He is "smiling" when we 
greet him in the morning, change his diaper, and play the "fuzzy bee game" 
during which I take his arms and playfully move them around.
These may not seem like huge changes but at 4 months, babies do not walk or 
make complete sentences, so the changes we are going to see are important 
but small. Bob Hartsoe who runs Miracle Mountain along with his wife Judy 
instilled this in us and strongly encouraged us to come back. We are trying 
to get Liam back in the middle of September.

In addition to smiling Liam is batting at objects. We are thrilled that he 
is achieving a developmental milestone on schedule.

Liam is still struggling with some issues. (prayer intentions)

Our number one problem is feeding.

Liam is still NG tube fed. We are working with a second feeding therapist 
and have consulted with a third. Sadly, we should have left Vanderbilt 
Children's Hospital with a feeding plan, however the feeding therapist we 
spoke with said that we could not start feeding therapy unless Liam sucked 
on a bottle ten sucks in a row. This is FALSE information and unfortunately 
we have a really late start on his therapy-he could have been much further 
along at this point.

We have come to realize that we really need a scope test and a barium 
swallow study. I wish we had done this stuff earlier but we lacked someone 
telling us these are the specific things you need to do for feeding. We need 
to rule out any medical issues that are stopping him from eating like severe 
reflux.

If there are medical issues, then we need to treat them. If the issues 
aren't medical then they will probably be behavior and can be treated as 
well.

We are 99% sure that Liam has to have a g-tube. This is a great sadness for 
us, because the operation has side effects including a recuperation time of 
2-6 weeks when he will not be able to have therapy. However since Rafal and 
I are the only ones that can feed Liam with an NG tube, it precludes Rafal 
from obtaining employment, which has not been forth coming.

We do feel that we have more feeding options and resources than we have had 
in a long time so we are optimistic. Kennedy Krieger (Baltimore) as an 
excellent program, unfortunately there is a 9-month wait.

Midline

Liam isn't really getting his hands to midline, which is crucial to achieve 
other developmental steps so we are praying that will come soon.

Reflexes

Some of Liam's reflexes are not working correctly. Some haven't shown up, 
some are not done correctly, and we are concerned that some will not 
disappear on time which is another dilemma.

Vision

Liam can see but his eyes are a bit crossed from time to time. We have a 
pediatric ophthalmologist this month to learn more about this problem and 
how to correct it.

Hearing

We know that Liam can hear, but we don't believe that he can hear 100%. He 
failed his hearing screening twice which is simply giving him 1 tone and 
seeing if he responds. We also realize that he may have a processing problem 
regarding hearing. We have a formal hearing test this month. Hopefully we 
will have more information.

Our Plans:

My mom has decided to quit her job so that she can help out with Lars and 
Liam, to ensure that Liam will have one person devoted to him constantly in 
order to continue his therapies. This is a much appreciated gift to us. It 
also enables Rafal to search actively for work.

We are contemplating a second round of hyperbaric treatments but struggle 
with getting Liam the patterning that he needs. Things are quite busy 
between all of his appointments OT, feeding therapy, chiropractic, etc.

We are also trying to move closer to my work so that I will be home sooner 
and can spend more time with the kids and help with therapy.

We want to thank everybody for all of your continued love, interest, 
prayers, and support!

June 17, 2007

We have just returned from Florida, we spent 3 days at the Upledger 
Institute. We specifically went there for cranial sacral work. We started to 
realize when we brought Liam home that his head didn't look right. The front 
cranial bone was "sunken" in. His small head was attributed to brain damage 
since brain damaged kids have small heads, but I wasn't 100% convinced of 
this. I did some research and realized that he may have an issue with the 
bones in his head. Normally when children are born, the head compresses then "pops" open, this happens naturally with a vaginal birth, and with the birth 
cry after a cesarean birth. Liam had neither. I contacted a group in Florida 
that specializes in malformations. We would need to get a CT scan for this 
group to look at his head. We decided to postpone that option. Then we opted for intensive cranial sacral therapy. We had two sessions with 
one of our
chiropractors, and saw within two days that the cranial bone 
moved forward. Thus, we felt that cranial sacral therapy was far less 
invasive. It looks like nothing is happening when cranial sacral therapy is 
performed since the touch is so light. The goal of the therapy is to allow 
the bones to move and allow the cranial fluid to move to where it needs to 
move. There were only 3 patients in this session. One of the patients said 
that she could barely walk using a walker for three years. She tried 
everything and opted for cranial sacral therapy. She could then walk without 
her walker, and she looked as if she was maybe 50. She was coming back 
months later for a second treatment because she felt her body stiffening 
again.

Cranial sacral therapy also helps with swallowing, so we had two specific 
reasons for attending. After 3 days Liam's cranial plates did move. The 
front plate moved completely forward and his fontenlle (soft spot) is a bit 
longer from "east to west". His back cranial bones protruded less and seemed to fit better into the skull. Dr. Upledger treated Liam for about 20 minutes on 
one of the days, which was a huge blessing since there is no one more skilled than Dr. Upledger (who is around 75!)

Liam's lower jaw still remains sunken (the jaw is connected to the cranial 
bones). Thus, I know that he still needs more work. We are hoping to return 
within the next few months when funds allow. (We received a gift of money 
which enabled us to go for this session.)

Since Liam's swallowing has not improved over time or with cranial sacral 
therapy, we are now extremely interested in hyperbaric oxygen treatment 
since this treatment does help children with swallowing. Initially I had 
shied away from the treatment on account of cost and the demands of the 
procedure. Treatments normally start at $100 a treatment (if not more) and 
research shows that you need about 40 treatments to see any progress. 
Additionally only two treatments can be done per day, and there needs to be 
a window in between the treatments, you cannot perform them "back to 
back".

Even in a best case scenario involving this treatment (if we were at my 
parents house which as a hyperbaric clinic within an hours drive), we would 
spend 2 hours in the car, 2 hours of treatment, and then we would have a 4 
hour window in between treatments. We would have to bring Liam's feeding 
pump (which is cumbersome to set up) and we wouldn't have all of the 
items/people to perform other essential therapies for Liam. There is a 
definite trade off with hyperbaric therapy, and I was not convinced the 
trade off was worth it.

Then while googling, I stumbled upon
 
www.miraclemountain.org. This 
organization was founded by grandparents who saw the incredible results when their 2 year old grandson had HBOT (hyperbaric oxygen treatments). They wanted to make the HBOT treatments more affordable. They purchased a chamber.  They are able to price treatments at $59 a piece and havehousing facilities so that the parents can stay on premise. I called to find out availability. They were so excited that I had contacted them when Liam was so young. They were also sad that they didn't have any availability until August. I asked if there was a waiting list for July. They told me that they would take my name, this was on Friday, I got an enthusiastic call Saturday morning to let me know that they did have a cancellation and Liam was going to come!! I had tears in my eyes when I got that phone call. It was such an answer to prayer. We are so thankful for a generous gift of money which is allowing us to take Liam to his HBOT treatment.


June 1, 2007

We have received a monetary donation and we are using it to take Liam to 
Florida for intensive cranial sacral therapy. We have seen the benefit of 
cranial sacral therapy (which is like chiropractic care a bit). Liam's head 
plates have moved. One of the things that cranial sacral therapy addresses 
is sucking and swallowing since the nerves that control those items are 
located in the head.

We are going to the Upledger Insitute in West Palm Beach beginning on June 
11th for three days. I think just Liam and I are going. One of the 
chiropractors who treats Liam said...if Liam were my kid, I would take him 
to the Upledger. Also, one of the other cranial sacral practitioners we have 
been in touch with said that he would consider helping us fund raise because 
he believes so much in cranial sacral so that Liam could have another trip 
if necessary.

Our other chiropracter Dr. Walkerwicz is now making house calls twice a
week so that we don't have to put Liam in the car. Liam has been responsive
and appreciative of not having to go on long car rides. He is sleeping better. 
He did six hours in a row last night...it was from 6-12...then he got up 
every three hours, but it is a start.

Liam is also less agitated in general. Liam (I have learned by observation 
and trial and error) doesn't know how to calm down and take a nap. He has to
be put down otherwise he will cry for hours. I now know that if he is up for 
about two hours, it is time to put him down. He will nap, and wake up more 
refreshed and we get more time in for therapy.

We also do a lot of Liam's therapy when he is in his infant bath. Water 
completely relaxes him and he is able to have more stimulation without being 
agitated. Thus, I am taping up black and white pictures in the bath tub, and 
playing a harmonica and xylephone...it must look rediculous but I think it 
is working.

Liam also has some pecular sleep habits...in my opinion but I learned my 
husband does this as well. Liam has to have either one foot expose without a 
sock or the ability to expose a foot. If we don't do this he becomes 
overheated and wakes up crying. When we do expose a foot, his body is
really warm under the blanket, the foot is cold and he is sleeping
peacefully...go figure.

Tennessee early intervention came to see what we needed regarding therapy. 
Jaye was impressed with what she saw and especially Liam's head control.
She inquired about the ng tube since most kids don't have one at this point in 
time, but she saw the benefit of our therapies and realized that most of our 
therapies would be compromised with a g-tube.

Also we have a volunteer for morning patterning (Liam is at his best in the 
morning). Rosie is going to start coming three days a week...


May 15, 2007

All four of us just got back from Oklahoma where we spent a couple days
with Phyllis Libby who works on rehibilitating children with brain damage.
During our time there we learned that Liam can swallow liquids. We fed him
with an eye dropper, then the breast (squirted some milk into his mouth), then
the bottle. Although we rejoice, it is very challenging. He takes in barely 
anything (maybe 10mls over a 45 minute period) and it is a laborious process 
to keep him interested and without him having a meltdown. It seems like it 
is going to take awhile for him to be able to take in any reasonable 
quanitity of milk, if he is eventually able to do this. I am going to have 
to spend much of my day just working on having Liam attempt to eat.

Developmentally he is doing reasonably well, but we will need to start 
intensive therapy. The gist of the therapy from a motor perspective is that 
babies learn much by slittering on their bellies, this creeping/crawling, 
sends the brain a ton of input and affects every developmental function of 
the baby. When the brain fails to send the signal to the body to crawl, then 
this sensory input process is shut down, and development stalls. Thus, we 
are physically going to move Liam in a crawling positions to send the brain 
the crawling signal, this should hopefully get the brain making more 
connections. You need three adults to perform this crawling therapy and we 
are hoping that our neighbor Lynn will help us out.

Phyllis said that Liam can hear and see--some of our concerns. We also took 
him to the pediatrician to see if he is gaining weight well. He is. I asked 
the pediatrician that aside from the NG tube, how does Liam differ from 
other babies? He told me that his arms were a bit rigid, and his head a bit 
smaller, and didn't seem as alert but couldn't really confirm on the 
alertness because every baby is different and Liam may have just been more 
quite when he saw him. He also said that Liam looked better than he 
anticipated.

Regarding Liam's head, Phyllis said that he needed cranium work. That the 
plates in his head were not aligned. (The front looks sunken, you can see 
that in the picture.) She said that these plates should have aligned 
correctly with a vaginal delivery, and if not the delivery than the sucking 
and swallowing, but that didn't happen. Additionally, the therapy program 
that we are addressing discusses head growth and specifically states that 
children who use this program who do start out having smaller heads can have 
faster growth head growth rates from these intense therapies and that they 
actually catch up on the head growth charts. I do hope this is the case.

Phyllis also bluntly said that for Liam to make necessary progress, I am 
going to have to spend a ton of time with him and his therapies.
 

May 6, 2007

We started chiropractic care for Liam. The chiropractor said that on account 
of positioning his neck on one side, he had a stiff neck, and on account of 
the neurological issues, his neck was tilted back. She also noticed that he 
had colic since he had a disk issue and some issues with his pelvis. Rafal 
was a skeptic but he noticed how relaxed Liam was after his adjustment. 
Thus, he brought him back for a couple more adjustments. We noticed that he 
no longer leaned his head to one side nor tilted it back as much. The 
chiropractor told Rafal that she thought that it would have taken much more 
time to have his neck show progress. She was surprised how quickly Liam's 
neck has progressed given the few adjustments.

The chiropractor also confirmed that Liam is sucking just fine. He has the 
correct pattern which is about 10 sucks, then a pause, then another 10 
sucks, then a pause. He will suck though the majority of his feedings or at 
least have his mouth around my finger. He did not tolerate plastic nipples 
until last night. I got him to suck a couple times on a plastic nipple, not 
to the extent that he needs to take a bottle but we are making quite a bit 
of progress. We are slightly stuck at this point. We think he can suck and 
swallow, but if he cannot suck on a bottle for the necessary length of time, 
then he cannot do the swallow study (which would officially confirm if we 
can give him liquids by mouth). If he can swallow milk, then we would be 
able to get rid of his nasal tube which would be wonderful.

Liam's tone is looking much better, his thumbs no longer fold into his palms 
as frequently and he is opening up his hands a bit more so that his fingers 
separate. His arms are also relaxing a bit and a not always bent all the 
time as they used to be. We are pleased that his tone is improving. To aid 
his changes for better tone, we are looking to start hyperbaric oxygen 
treatments.

We heard about these treatments from Rich and Laura Scanlon, whose late 
daughter Therese had brain damage as well.  They told us that Therese 
improved with these treatments and encouraged us to start as soon as 
possible. The premise for these treatments is that when there is injury to 
the brain, some cells die, but other cells become "dormant". When these 
dormant cells are exposed to concentrated levels of oxygen, they awaken,
and one of the affects of awakening these cells is improved tone.

These treatments don't work for all children, but from our limited research 
we have learned that if you do not see improvement by 35 treatments, then 
you will not see any improvement.  Thus, we feel that it is an important 
step to take, and we will know rather quickly if this is something that can 
help Liam.

We are really thankful for all of the support (financial, emotional, and 
especially PRAYER) we have received, especially our from our mothers. My 
mother in law Gabby, spent 4 weeks here. She took great care of us and Lars 
which enabled Rafal and I to spend time together at the hospital, meet with 
doctors together, and focus on therapies for Liam, which wouldn't have 
happened if one of us had to watch Lars so that the other could be at the 
hospital. My mom spent a little over two weeks here, and is now in 
Medjugorie praying for Liam amongst the other prayer requests she brought 
over.

I never dreamed that Liam could make this much progress this quickly! Then 
again, we are still in the Easter season.


April 28, 2007

Regarding Liam, my husband and I continue to pray for miracles but we have 
also focused on praying for wisdom. Our prayers were answered regarding 
wisdom. On April 20th Liam was scheduled for GI surgery for a feeding tube.
Since there are multiple kinds of surgery regarding feeding tubes, each with 
significant risks and side effects (basically choosing between two really 
bad options), Rafal and I were not comfortable with having surgery on April 
20th. We wanted more time to investigate the surgeries to see which one on 
the short term and long term would be the best one for Liam.

Thus, we decided to postpone the surgery, this was a last minute decision, 8 
hours before surgery. We decide to bring Liam home without the surgery. He 
came home this past Thursday. We are so thankful to be out of the hospital. 
We were allowed to continue to feed him through an NG (nasal gastric) tube 
(this is a tube that goes from his nose into his stomach). This is not a 
common way of feeding babies with brain damage because it requires more 
involvement from the parents, etc. However, the hospital staff felt 
comfortable that we could handle the responsibility.

From the time we decided to postpone (and hopefully forego) surgery, Liam 
has been able to manage his secretions. This means that he is swallowing and 
does not need to be suctioned so that he won't choke. He is managing his 
secretions so well that we have not felt the need for nor encouraged by the 
doctors to use a monitor at home. Additionally, we have not use a mechanical 
suction device for a week or so. Even though Liam is managing his secretions 
it does not mean that he will be able to swallow food. I have learned that 
swallowing is a very complicated process for the body. Once must be able to 
suck (or move food in the mouth), swallow, and breathe at the same time. The 
doctor now thinks there is a possiblilty that Liam may not need surgery 
afterall. Normally the doctors are never positive.

Liam's sucking reflex is coming back. If I put my finger in his mouth, he 
will give me 8-10 "sucks" then take a break then do a few more. He can suck 
so vigorously that his ears are moving. Liam is adverse to plastic though. 
This is a type of oral aversion that happens to babies that are suctioned. 
Basically, babies that have been frequently suctioned come to a point where 
they don't like anything in their mouth. For Liam, he doesn't like anything 
plastic. This is a problem, because in order for him to start feeding from a 
bottle, he has to be able to tolerate plastic in his mouth.

Liam has no problems lifting up his head and pushing up on his arms. His 
thumbs still remain fairly clenched and he has tone issues. He is rigid in 
his upper body and flaccid in his lower limbs. We are working on massage and
he has started physical therapy with the hope of keeping his body less rigid 
and improving tone. Liam has failed his hearing screening twice. This doesn't
mean that he is deaf but it means that there is strong reason to believe that
he has hearing problems.

Liam is able to focus on faces and his mobile. He is not able to track 
objects-when an object is moving horizontally, the baby's eyes should follow 
it. Not all babies track at 1 month, so I am not overly concerned about this 
problem. Luckily Lars seems to like Liam, although he has pulled his blanket
off him twice today. We don't have any jealousy issues yet.
Liam has gained weight and is now over 11 pounds, and is outgrowing his 0-3 
months clothes! We are in the process of investigating natural remedies such
as nutritional supplements and chiropractic care as additional therapies.

Liam does have gas/colic. I believe Liam like Lars has an allergy to dairy. 
I am very thankful that he is my second child since I can see the 
comparisons with Lars' problems with gas. Liam arches his back when he is in 
pain, this is a sign of neurological problems, but I am hoping it is just in 
connection with his gas, and not a neurological issue.

Latest Status:

The things that Liam has made tremendous progress on:

1) His ability to manage his secretions
2) Lifting his head
3) Crying
4) Focusing on faces
5) Sucking
6) He stopped shaking

Remaining Challenges:

1) Overall tone issues in his body, a sign of cerebral palsy
2) His hearing
3) The ability to suck on a plastic nipple and swallow so that we can 
bottle-feed him, even perhaps nurse!
 
 
April 5, 2007

We were told that the MRI was completed today and that there is damage.
The doctors spewed out a bunch of terms, none of which we understood and
said that we all had to meet with the neurologist tomorrow to discuss this
since the doctor's weren't exactly sure what the results mean.
Thus, we are in the same prediciament where we have bad news, really no 
information and the same catch phrase everything is it "depends"--it 
"depends" refers to EVERYTHING, whether Liam will ever suck, whether
Liam will ever walk...they offer NO information.
I am extremely doubtful that we will have any more information tomorrow. 
Even if there is damage, the doctors can't say what that will mean.
Hence, when we have some type of news that makes sense or answer we can 
offer, we will let you know in more detail.

There are some good points according to the doctor, Liam is breathing on his 
own, he is not aspirating his secrections (ie, he would not realize that 
there is something in his throat, and attempt to breathe which would cause 
him to breathe fluid), and he seems to be ingesting breastmilk.
The bad points are that he is not sucking or swallowing, his focus is poor, 
and his muscle tone and movements have not normalized.
 

April 2, 2007

Liam made two "cries" yesterday. The nurse confirmed that there was a "cry"
but I wasn't sure. Things are not going well and like every question we ask, 
the answer is always "it depends".
 

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